Recently a friend of mine share a very interesting link titled “Ritalin, Prozac and other educative systems“. The comments recued the final sentence of this article: It’s easier to keep on with a routine, even though is painful, than to change and adapt oneself. Immediately I remembered something that the midwife of the neonatal unit told us, when Rocio was only a few weeks old: “She must adapt to your life, not the other way around”…

To me, at that moment, nurses, doctors and specialists known better, they were brilliant and I listened to them with all my attention. Back then I thought those words were very wise. However, I don’t remember having thinking in them ever again in this last five years, until now. I never again thought about the possibility that she was the one that to adapt herself to our lives.

How? Simple and obvious things like the house where we used to live and the car we had were not useful anymore. Others like the child care center just in front of our house didn’t accept her. Traditional schools don’t accept her. Traditional medicine hasn’t been a good choice either, at least to us. What I understood as healthy food wasn’t. A lot of the clothes that is sold don’t work for her, like coats, raincoats, girl shoes are impossible to wear for Rocio.
Neither were useful less tangible things like hopes, dreams and projects about my motherhood, how I was going to raise my children, dates, ideas, methods. I said children because before I sure wanted to have a few and one after another. Work planes were also changed. What I understood as “achievements” was redefined. The concepts of success and happiness also changed. Luckily also changed the few I knew about disability.
Was that a mistake? Should I have followed the midwife advice and let Rocío adapt to my life? Would that had been better for her? Would that had made her happier? Would I have shown more wisdom and maturity? Would that be real growth as a person? But… Would that adaption be possible? Wouldn’t it be denial?
Maybe I say this as personal defense, but I think this premise might be useful to many parents, but not to parents with children with special needs. Adaptation is a fundamental key, to forget our preconceived ideas. To learn and built again all what is needed. Maybe what it is hard to learn is when is it worth it to make the effort to “fit” in traditional structures and when the best benefit is out there. The problem is that all that is not traditional is more work for us.
This is why probably my friends, also mothers of SN children, emphasized that sentence “it’s easier to keep on with a routine, even though is painful, than to change and adapt oneself”. Sure it’s easier, to change and adapt seems like a colossal work when we think all that involves changing and adapting.But it is easier when we don’t feel we are alone…

Maybe the keyl is to pick our battles. We can’t fight them all… Some things shouldn’t changed in order tokeep some sanity. We can accept some things as they are and adapt them just a little. Some things are easier to change, but others we must change them and adapt radically. Even though it seems impossible, we’ll do it because it is our responsibility and we want to give the best to our children. We must change and adapt.

Lately, in the blogosphere, several mothers of children with disability had reflected on the feelings that the disability of their children make them feel. It surprises me that most of them are still hurt by this, no matter if their child is little or big, or if he or she has a few or a lot of limitations, some say openly that their lives would be easier if their children would not be with them. They talk about abortion, euthanasia.
It stunts me a lot. I used to think that most of us, after a while, got over this that it was only a matter of respect everyone’s times in order to overcome the grief. However there are many factors and experiences that have an influence in each family…

My daughter was born five years ago and today her disability does not cause me any pain. I do not think everyday in her diagnosis, in her brain images, and I can not imagine my life without her. To me, her disability is a part of her and a part of us. I believe that I just overcame that stage of pain and anger when I understood that, that damage brain was nothing less that my daughter’s brain. Maybe it is not the one I would have wanted, but that was her brain. I no longer rejected it and started loving her 100%, no “despite” her disability, but with it. I love my daughter entirely, just as she is; to me she is perfect with all her imperfections. She is so wonderful and happy, and we are so happy with her.Sometimes I think this is selfish of me. I think I should not like the way things are, because my daughter’s life would be easier if she didn’t have disabilities. But this are just suppositions, the truth is that I do not know how her life, and ours, would have been if she would not have brain damage. I firmly believe that we would be less happy than we are today, that is why I consider this thinking selfish, but it is also possible that she is much happier that she would have been without her neurological damage, because today she has happy parents that adore her, unconditionally, without asking anything in return but her happiness.
We talk about “acceptance”, to accept that whatever happened just happened. To me this word is not enough, I am grateful for what happened because it gave me this marvelous present, in which I do not see, neither disability nor tragedy, I just see a happy daughter, the most beautiful, lovely, affectionate, hard worker, tolerant, smart, quiet, someone who has a lot of friends and a lot of love, a lot of joy and a wonderful smile. I only see how happy we are and all that we have learn and enjoy with her. I can only be grateful for each day that we have been able to enjoy our beautiful and lovely daughter.

As a mother of a girl with cerebral palsy, for a long time, my main concern was her rehabilitation. Today it’s not. Today, her rehabilitation represents a huge part of our daily life but it is just part of our routine and it is not stressful at all, today doesn’t stress me and neither does ‘the future’. Today, that we are comfortable and calm, we can start thinking about a motherhood that is no longer “special”, but that it is just motherhood, and we can learn all about other things.

This year I learned a valuable lesson, one that I hope it is obvious to many others, but for me it was huge learning. It was something that started to combine along the year through different events. Somehow, all of these events guided me to the same conclusion, one that is pretty simple, but that it took me 5 years to learn, as a mother, and 28 years in a personal way; a capable person is not determined by the physical or cognitive skills that he or she has, but by feeling capable, by having a positive self esteem and trustingt ourselves.

It sounds good, right?? But I think this is a quite complex matter and I have been thinking about it for several months now, probably since my friend Natalia gave a speech about self esteem and frustration in children with disabilities. I have seen persons with cerebral palsy that play the cello, that participate in a dance company, win the Miss Iowa or go to college and study, got married and have kids. I know people who are really happy, even with their “disabilities”.

On the other hand, André Agassi, great former tennis player, publish this year his book ‘Open’ . He confessed that he hated tennis, that he was not happy at all, that he grew up with a father that was never satisfied with his achievements and that always demanded him more, there was always a critic but never a congratulation. He also tells that when he won a big tournament, after three consecutive defeats in other finals, he called his father and he reply “but how could you lost the fourth set?” Agassi, a very capable man, talented, a successful sportsman, considered a winner by many people… Was not happy! You can read part of the interview in this link.

It is obvious that our role as parents is key for our children’s happiness. Natalia said in her speech: Children create their self image through the image of themselves that we show them. We are their mirrors.For a long time, as the mother of a girl with disability, I was directed towards her achievements, her progress, and her improvements. However there is a fragile balance between loving our children just as they are and helping them to overcome their difficulties; and wanting them to “get better” and develop their maximum potential. I think this is for children with and without disability.

To us, this learning has been taken from different rehabilitation approaches, mainly. Learning that as parents, we not only have to evaluate a treatment by its effectiveness in the motor functions, but also for how it affects her emotional development. First and foremost her rehabilitation I want a happy daughter. This is why her rehabilitation can not be at any cost and I do think some therapies can affect in a negative way the emotional development of a child and his or her bond with the parents.

I want my daughter to have a positive self esteem, because that is what makes a really happy person; to feel loved, to trust oneself, to trust one’s skills. Because nobody can do it all, we all have limited capabilities, but the important thing is to feel that we can and to trust enough in ourselves to just try. We fell this trust during our childhood, when we feel unconditionally loved by our parents, loved just as we are, perfect with our flaws.

I want my daughter to be just as she is and today, I feel that this is my main mission as a mother, to achieve a positive motherhood.

For a while now I have been thinking about the word we usually use to talk about disability and to refer to the disabled people. This is not just out of linguistics curiosity but because I do think that the term we use is relevant. Not only there are some terms more hideous than others, such as handicapped or crippled, that do not deserved any comments, but because I think that the terms used might have an effect, negative or positive, in social integration. I wanted to choose my new option as an new year resolution, but this choice it’s been hard.

There is one thing clear; I am a person who thinks that the person must come first. I think that we must talk about “people or person with disability” and not about “disabled”. This is because to label somebody as a disabled involve leaving out all the other characteristics that they have as a human being, for example that they have a valid opinion just like ours, that they have feelings, just as valid as ours. This is based on the prototypes theory that you can read forward in this post (it is in spanish though).

Even so, “disabled” do not convince me yet. There have been many proposals: different capacities, functional diversity, even “super powers”. As parents we focus on their capacities, but in my opinion, this terms do not mean anything to the rest of the world. An argument that opposes this is the following, what would happened if this terms were used to legislate, many people that is not disabled might be included if the term “different capacities” is used.

An argument in favor of using “person with disability” is that in 2001 the World Health Organization, along with many other similar organizations and linguists, wrote a document called “International Classification of Functioning, Disability and Health (ICF)”. In this document it is decided, among other things, that we should stop saying “handicapped”, instead we should use “person with disabilities”. This agreement was signed by 191 countries.

I do not know if it is the linguist in me or the rebel, but it is hard for me to relieve that a Word or term can prevail this way and it is even harder to accept when it is from the WHO. Besides, reading the document gets me on my nerves. First, “disability” is defined as an opposite of functioning and, to certain point, also opposite to Health. It is classified by different “problem” degrees, and it says, explicitly, that in order to define “problems” we have to compare abilities with what we consider normal. What can I say? To me this is a reason to avoid using the Word “disability”.

I think that the only people who can decide what word to use are people with disabilities. Luckily, the past few decades they have put forward their opinion in texts and in real movements. To us, who lived in this part of the world, might seem incredible that, already in the sixties there was a movement called Independent Life that defended the rights of people with disabilities. Then a “social model” to understand and refer to disability came up, one that opposed the medical model that it seems, is leading still this days.

The funny part is that English–speaking people, like Brisenden or Watson-Hyatt (my favorite, personally) prefer “person with disability” while Spanish-speaking people show in favor of “functional diversity”. So we are back at the beginning, what can we do?

I learned sometime ago that a big difference between population with disability and other minorities is that the first group were not born in a family that belonged to the same ‘minority’. What is the importance of this? Family is the first circle of social integration, and if the family shares the condition is possible that feelings of pride, of belonging can be appreciated and our peculiarities can be valued. Generally, a person with disability is born in a family without disabilities, and this family knows only social prejudices about it.

Where am I going with all this? Well I think that we should called things by its name and not to change the term “disability” but to change the negative connotations that society has given it. In order to do that we should stand up and proudly say the word disability, let the rest of the people know that this is not something we should be sorry or ashamed, that diversity is part of our life, that we are all very different and our peculiarities can also be wonderful. Because trying to hide the reality is worse. I’ll still be talking about “disability” and I will still be writing and sharing so this way a change happens in our heads when speaking about disability.

Today is another day to celebrate, to celebrate and be thankfull for how lucky we’ve been. Today we celebrate two years in ABR. That’s right, on this day 2 years ago this great adventure began. Although it seems much longer for all that this time has meant, for all that each of us has changed since then. It’s been more than 3000 hours of ABR in these two years, you just have to look at the picture accompanying this post, taken when we finished our first training (thanks Gavin for the photo!).

That new year was very different, we started 2008 with so many hopes, so many dreams, so nervous. On January 4th we left to Argentina, having no idea to what we were going. Back then, there were more families in Chile to ask to, there we no ABR blogs in Spanish and the mailing lists that existed we didn’t know. We simply went without asking much. We had a good feeling …

It was Jan. 5th when they teach us the first exercise: Chest. But we did not understand anything. We were in a room with 3 more new families and two coaches of ABR Canada. The day finished and still did not understand much … That was just practice and we needed the theory. It was the next day, when we got the ABR explanatory talk that everything changed. I remember that my husband and I were attonished. We were surprised and amazed. Also happy because we finally understood what was happening to our daughter’s body and the solution was in our hands. We looked each other and there was no need to say any words. This was it, everything else was left behind.

My mother at that time was with Rocio and could not pay much attention to the talk, but she heard enough to know that this was what we wanted, what we needed: a noninvasive therapy for our daughter, a therapy that does not require us to put an orthotic, botox, to make her bear weight or stretch her. Por fin podíamos dejar tratamientos que se oponían al instinto de madre y al sentido común. Finally we could stop a treatment that opposed to mother’s instinct and common sense. We could see a more normal and happy life. At that moment, everything changed. When we left the room, the new team was set: the 3 of us would be her therapists from now on. The change was instantaneous.

Two years from that … But I think I’ll never forget, besides we relive it every time new families begin a nd find this true wonder. Today fortunately many families know and choose this method, so many that we have our own satellite in Chile … We are not alone anymore in this adventure, on the contrary, we are surrounded by many families that live and share this amazing experience and our initial surprise reapears every time we see how are changing these children’s bodies and functions. Many friends, something that we did not suspect will came along with the therapy.

I thought the ABR would be only a change in the method of rehabilitation, but for us it was much more than that. To begin with, there are friends, a true community of parents together no matter how distant we live, we find support, care and understanding as nowhere else. We also gained a more normal life, which has our home and family as the core rather than rehabilitation centers, doctors and therapists. Also, my daughter’s health has also improved. ABR improves quality of life in many aspects, most of them unimaginable when we started.

We have also grown as parents. ABR finally allowed me to achieve this union between ‘mother’ and ‘therapist’ that I craved, one with no conflict between them. A humanized therapy, which enhances the mother-child bond, where no children are asked to do the impossible every day nor invasive and painful methods are used, but one that respects their pace and the focus is on what we do have and not on what is missing. A therapy where there is progress and is evident to all. This is a very significant change, which now allows me to think about positive motherhood, concerned to cultivate positive self-esteem and thus her happiness. Because that is our true goal as parents.

As you can see, there is much to celebrate. Mainly, my daughter now has a healthier body, stronger and more functional. I celebrate that all the expectations that we had two years ago were amply met. I thank the day decided to start, thank the our never well-considered piece of craziness for daring, I thank having had the enormous good fortune to found ABR and, of course, grateful to ABR and the team behind for all it has given us. That and more, we will continue to share our ABR experience with others so that every day more families can have it as an option. I love ABR!

Did you hear the news?????? We finally did it!!! ABR is coming to Chile next year!!!!!!!! I’m SO happy about it, specially since I’ll be the local organizer. A lot of families wanted to start but they just could not travel, so this is great news for a lot of people.